The Effects Of Alzheimer’s: Caregivers And The Spiritual Side Of Dementia

(Victorville) Alzheimer’s is something that many don’t want to think about, but with a series of articles we hope to shine some light on the subject as to what it does, the severity of it and what type of help is available right here in the community. For the final article, we sat down with a Spiritual Care and Bereavement Coordinator to talk about spirituality and help for caregivers.

Kathy Farace is the Spiritual Care Coordinator and Bereavement Coordinator for Odyssey Hospice in Victorville. She took time out of her busy schedule to speak with High Desert Daily about her role at Odyssey, how spirituality comes in to play, and how caregivers can get the support they need. “Basically, hospice is a inter-disciplinary team of people. Our goal is to take care of the physical as well as the spiritual and emotional needs of our patients and their families. So, the component I have in spiritual care coordinating, sometimes called a chaplain, is basically to coordinate the spiritual care of our patients and families.” Farace coordinates visits with priests, Eucharistic ministries and any denomination that the patient or the family requests.

For many, including the patients, the family, and the caregivers among others, the path of Alzheimer’s crosses into the spiritual realm in one way or another. “In the hospice journey, for some people that haven’t had a religious history, they have religious or spiritual questions now. So then my job becomes being that person to talk to about it, to ask those questions. Not that I have the answer, but I go on the journey with them.”

The journey doesn’t coerce one into a certain way of thinking or worshipping, as Farace speaks about how it is not her job to force her beliefs on anyone, but mainly to be there. “I am very respectful that they had a full life and full journey, and my belief in God is that God loves them more than I could, so he is going to create a circumstance if they have questions. I will go on a journey with them and help them, best that I understand.”

Sometimes faith can be the best thing for one with dementia, as Farace recalled a past patient, “If they have a religious history, some times they are comforted by spiritual activities. It’s familiar, and sometimes it will trigger something in them. I had a patient, completely non-verbal, she would look at me; she knew I was there but she didn’t really talk to me. Then one day I brought in a cd player with a cd with old hymns on it, because I talked to the family and knew what her history was. So I brought it in, and I tell you; that woman knew every word. So what ever was going on with her that she couldn’t remember her loved ones, but she could remember the words to those hymns.”

The impossible time of being with a loved one nearing the end of Alzheimer’s is something no one wants to think of, but there is help and support for not only the patient, but for the family as well. “Bereavement care can be pre-bereavement prior to the death of the patient; sometimes it is the patient who is grieving because they are losing everybody, and sometimes it’s the family, anticipating the death of the patient, so my job would be counseling and helping them through that grief process. We also follow the family of our patients for thirteen months after the death of the patient with grief support and resources. If thirteen months isn’t enough, that’s ok, we will keeping following and do whatever it takes.”

Support is something everyone involved in the care of a person terminally or chronically ill needs, be it the family or even an outside caretaker. This January, Odyssey Hospice started a support group to help called Caregivers Connect. After searching for support groups for all types of terminally or chronically ill caretakers and only finding ones specialized in Alzheimer’s in the High Desert, Farace knew that one needed to be in place immediately.

“It’s basically for caregivers of patients with terminal or chronic illness, that would include Alzheimer’s, but it broadens it to include everyone.” Caregivers Connect meets once a month, and is open to all in the community, not those only associated with Odyssey Hospice. In addition to the support group meetings, there is also a newsletter printed every month, which offers tips and answers questions asked by caregivers. But with a caregiver watching over someone all hours of the day, how can they find time to be a part of the support group?

“If a caregiver would like to go to the support group, we can arrange a volunteer to go sit with the patient so they can participate in the group,” Farace stated in regards to a way for a caregiver to get that small amount of time to come and meet with other caregivers, which could be for advice or simply a release. “When you have a job, your to the job at 8 am and get home at 5:30 pm. Caregivers don’t get time off. They don’t get a vacation, unless there is some group of support that can help them with time off; their load is incredible. Now we think if were not handling everything ourselves, we’re weak. That’s what society kind of says, and that’s not how it should be. The community needs each other, and caregivers definitely need a support group of people, where even if they didn’t get any physical help from, they have somewhere to download it all.”

For more information on Caregiver Connect, contact Kathy Farace at Odyssey Hospice at (760) 241-7044. If you would like to apply to become a volunteer, contact Amy Torres, Manager of Volunteer Services at Odyssey Hospice at the number above.